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So much blood - question about current flare

Chronic Illness Forums
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Ulcerative Colitis
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lindah1220
New Member
Joined : Nov 2016
Posts : 6
Posted 11/16/2016 7:45 AM (GMT -7)
I was diagnosed last year with uc in the sigmoid colon after 8 months of bleeding and urgency (no D). I was hesitant to start medication but the bleeding got so bad that I started lialda. I took them 1.2g 2 times daily for 6 months and after getting worse, it finally cleared up (i think lifestyle factors -less stress had alot of play). Anyway I went back down to one a day and I had no bleeding for about 3-4 months (although I still had some mucus and gas pains once in a while.

a few weeks ago I had a BM in the morning (usually just 1 -2 in the morning after coffee, mostly formed) with blood on the stool and I knew I was back into a flare. It was very light at first but would get worse on some days (food, exercise, less sleep ? Im not ever sure which one) . I also got really exhausted and had to take a few days off of work to just sleep( with random upper abdominal pain that has never happened). It's very frustrating because I went from running marathons for the last few years and lifting to only being able to do short workouts and yoga (I guess the exercise inflames my body?). My GI doc told me to up my lialda and start on rowasa enemas. I upped lialda to 3 a day for the past week and blood has actually gotten worse, has anyone else dealt with this? not really D just bright red blood (more with the first BM) and sometimes the feeling of having to go but only blood/mucus. Should I up to 4 lialda or just try the enemas (which I'm hesitant about)?

My diet has been clean for years, rarely any gluten or dairy aside from greek yogurt. Mostly fruit, vegetables, tofu/chicken/eggs/fish, and sweet potatoes/gluten free bread. Has anyone had better luck on a bland diet of just toast and low fiber? I'm getting conflicting views, I think paleo actually makes things worse sometimes.

I'm 27/F. Any advice really helps!
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 15540
Posted 11/16/2016 8:16 AM (GMT -7)
I'd use the rowasa enemas as prescribed. We're all initally a little quesy and anxious about the idea of using an enema but they're very, very effective and it's results that matter. Its not a big deal, follow the tips below and you'll do fine. Pills aren't good at reaching the rectum, the rectum causes most of our troubling symptoms, the rectum has our most severe and stubborn inflammation, and enemas go right to the rectum and heal fast :-)

(From our resources thread) Tips for using meslamine/rowasa enemas:
  • When you first start using enemas, use them in the bathroom very close to a toilet as they can come up very quick and unexpected. As you get better at them, and more confident, you can administer them in bed.
  • Add extra Vaseline (petroleum jelly) to the tip of the enema.
  • Warm the enema up to body temperature before administering. Put it in a pocket for a while before using, or warm it up under an armpit.
  • Squeeze all of the air out of the bottle before administering. You do not want to inject any air into your bowel as it will both be uncomfortable and make it likely you will need to urgently evacuate the enema fluid.
  • Lay an old towel down as any drips of the enema fluid can stain clothing, carpet, etc.
  • Use one of the positions described in the instructions.
  • Administer the enema slowly, too quickly and you will be less successful. If you wish, you can do one half the bottle first, wait a few minutes, and then administer the rest.
  • Stay reclined on your left side for about 20 minutes to allow the enema fluid to be absorbed. Retire for the night.
  • It takes practice to hold the enema in for 7 hours. Do not get discouraged, and keep trying. Even if you evacuate part of the enema, some will likely remain and heal you. As you heal, it will be easier to retain them for longer lengths of time.

Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 12mgs pred (tapering)

Although our butts are literally behind us, our butts figuratively lead all of our life decisions, if you want UC summed up neatly within a nutshell. Put a crown on that derriere.

Post Edited (iPoop) : 11/16/2016 8:21:21 AM (GMT-7)

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YiyiBoo
New Member
Joined : Nov 2016
Posts : 9
Posted 11/16/2016 8:32 AM (GMT -7)
Stick with your Lialda and YES to the enema's! (and yes to everything ipoop has just said - the enemas will reach where the oral medication can't quite, this is likely to be the area you're bleeding from.)

Also, the sooner you start the enemas, the sooner the tissues can repair and prevent further damage, it's better to start them ASAP to avoid progression of your symptoms.

Keep us updated as to how you get on! :)
Female - 26
First Symptoms - December 2015
Diagnosed 'Diffuse Colitis' (proctosigmoiditis?) July 2016
Mostly in remission since with Asacol + Salofalk.

Hopefully now at the end of my worst flare so far since tapering meds. Not 100% yet, but much better thanks to the enemas.

Current meds: Asacol - 400mg x 6 daily + 2g Salofalk enema nightly.
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lindah1220
New Member
Joined : Nov 2016
Posts : 6
Posted 11/16/2016 8:35 AM (GMT -7)
Thanks! we agreed that I would up my lialda for a month and then start the enemas if I didn't see an improvement but I think I'm going to stop being stubborn and start them sooner. I
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YiyiBoo
New Member
Joined : Nov 2016
Posts : 9
Posted 11/16/2016 8:56 AM (GMT -7)

lindah1220 said...
Thanks! we agreed that I would up my lialda for a month and then start the enemas if I didn't see an improvement but I think I'm going to stop being stubborn and start them sooner. I

Yes definitely, you'll (hopefully) thank yourself for starting them sooner! I wish they'd have been recommended to me much earlier than they were.

I hope to hear you're better soon!
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8511
Posted 11/16/2016 9:44 AM (GMT -7)
toast and low fiber ? i think that's the blech diet isn't it ?

the best diet is the one that works for you - some folks claim that diet makes no difference - my belief is they just didn't find the "right" one -

tip of the day: sometimes GF stuff is worse that the G - avoid the store bought crap in lieu of simple food replacements -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !
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lindah1220
New Member
Joined : Nov 2016
Posts : 6
Posted 11/16/2016 9:49 AM (GMT -7)
thanks soynomore, I don't eat GF bread often, I usually stick to oats and sweet potatoes . Nothing bothers me when I'm not bleeding but when I am almost everything bothers me!
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Katerina-b
Regular Member
Joined : Sep 2016
Posts : 175
Posted 11/17/2016 9:31 AM (GMT -7)
Do try rowasa. When I used it before, it was very effective and worked fast! Its easy to use too. As for the diet, I noticed you mentioned drinking coffee. Probably not the best idea while flaring... Also sweet potatoes and oats have a lot of fiber, which might be irritating. As others have said though, everyone responds differently to diets.
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lindah1220
New Member
Joined : Nov 2016
Posts : 6
Posted 11/17/2016 9:56 AM (GMT -7)
Thanks Katerina! I decreased from 2 coffees to just half of one in the morning (when I usually go to the bathroom anyway- like clockwork) . I'll try reducing the sweet potatoes and oats too and see if that helps!
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ewafromwarsaw
Veteran Member
Joined : Jun 2013
Posts : 1346
Posted 11/17/2016 6:45 PM (GMT -7)
Are sweet potatoes bad for uc ?? I've always thought the opposite. As for oats, i'd agree
Ewa, 24 yrs old from Warsaw
Left-sided colitis, diagnosed in September 2012
Current meds: 2x2 Asamax (500 mg) and Salofalk enemas (twice a week)
Mutaflor or VSL#3
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ewafromwarsaw
Veteran Member
Joined : Jun 2013
Posts : 1346
Posted 11/17/2016 6:46 PM (GMT -7)
and you should switch to bone broth
Ewa, 24 yrs old from Warsaw
Left-sided colitis, diagnosed in September 2012
Current meds: 2x2 Asamax (500 mg) and Salofalk enemas (twice a week)
Mutaflor or VSL#3
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